"A Blow Upon a Bruise"

Written in treatment room:
     Once again I've left it a little while longer than I intended - sorry! I really need to try do this at least weekly, otherwise I forget what I've written and whats happened and what I've written about whats happened. Like this week. And last week. Also sorry twitter people for failing to post yesterday like I promised.


With the increase in the Junistar my jaw hasn't been causing me any pain at all really, except when I would bite my lip eating (which was a lot for a few days). However, the numbness remains. The xray of the jaw revealed that I have an impacted tooth, most likely having nothing to do with the pain. So I guess I need to see a dentist. Fun. 


Fatigue was an issue again; there have been a few days where I only really woke up and left bed to eat. Its pretty constant actually, I've dozed of d 20 times just whi


Written at home a few hours later:
     Ok so I pretty much gave up after falling asleep on the keyboard for the hundredth time and here I am at home, a bit more awake hopefully gonna be able to finish the post. Funny it happened just as I was telling you how tired I am. Its hard to tell if it was the new chemo hitting me or if its from sitting in a chair on lots of drugs for hours and hours, or if its how little sleep I got last night or (the more likely) all of the above.

Yes! Thats right, a new chemo. Yesterday I was booked in for a CT scan of my chest (much better detail than an xray) followed by blood tests. My veins were very uncooperative. Eventually one of the people trying to get a canular in wound up pull out the local anaesthetic and going for the wrist. Something unusual happened during the scan; the injecting of the contrast dye briefly caused severe pain up the right arm for a moment. I had a moment of panic, wondering if the canular was indeed in the vein. Though seconds later I tasted the funny taste and felt very very hot, both signs the dye was going where it was meant to.

We went over for bloods then, and I was pretty much certain by the time we got there that I was very low on haemoglobin (the walk from one end of the hospital to the other had left me very short of breath). They got the port first go and it was all done pretty quick so we left the building. Just as we were about to get into the car I got a call from the nurse I'd just seen saying my oncologist wanted to see me. So we went up, me panting and sobbing; exhausted, low on haemoglobin, out of breath and certain it could only be bad news.

I'd like to say I was totally wrong and that it was good good news. Well it wasn't really either. Judging by one of the tumours in my chest (in soft tissue, easier to judge growth) there appeared to be a very slight amount of growth, though it was within the margin of error so technically one cant say that there was any growth... or something... I dont know. I find it so difficult to retain the details of anything I hear or read. Other sites appeared to be stable, but not shrinking. So the decision was not to continue giving me a chemo which it appears the cancer cells are getting used to and instead switch to a new, very different protocol. I dont know if any of you look the names o these things up, but I'l post the name of the two drugs next post (I dont remember them today) just in case its of interest to people.

So its a little bit of a blow. On a bunch of bruises. No gonna lie, its been a very difficult year. Its becoming easier for me to understand people who rush into alternative therapies over usual treatment - the need to feel more involved and in control of treatment and illness is pretty dang strong. Dont you worry, I have no intention of abandoning the empirical evidence ship. Its just it'd be nice if the treatments would work a little longer, and I had more power in the situation than being driven (I cant even get myself to my own appointments) to various appointments.

So today I had one unit of blood and the new chemotherapy. It was a long day even without the second unit of blood (to be had tomorrow morning, there wasn't enough time today). I could barley keep my eyes open after a short while, as you may have noticed in the first few paragraphs haha. One factor which certainly contributed to the tedium of the day is the unusual increase in pain I experienced last night. Pain, or at least awareness of sites which would be painful without medication, has been gently increasing over the last week or two. I woke in the middle of last night unable to move enough to get the breakthrough pain on my bedside table. I could reach my phone thankfully. I'm more comfortable now and hope that I'l be able to do the things i was hoping to do this weekend. One of the pains is in my left arm and thought perhaps to be related to the painful dye injection/canula thing - apparently the dye can cause discomfort or something for a few days. I haven't experienced anything like it before, so I wonder if perhaps the vein was damaged from the pressure? Its high pressure and little veins... I dont know...

I've had some lovely days with some friends and family. I got to see my grandfather, youngest cousin and uncle for the first time in years so despite not getting a lot of time, it was still special. My nana was also down which is always lovely.

I cook most days trying to find exciting things to try. Such a great way to keep busy and active. Well, as active as my situation permits. I think I've covered the major events of recent weeks, I'l be off to bed now!